Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

LID - Day one...

Woolymammoth
Posted by
Hey Rich! Hi everyone You sound good rich and sounds like you've got some pretty nice facilities there. Great thatbyoubare keeping in touch too! It's weird isn't it the differences in advice we are given.mi took in knitting and all sorts when I went in (hey it's cool you know!) and brought it all home with me! I was in for 3 days I think! I'm now glowing too but only a teeny tiny amount. I did manage to close a door with only my eyes........oh no wait I think that was a dream. Dammit. I took my tracer dose today for my WBS on Friday, and had thyrogen injections on Monday and Tuesday. Feel fine, although really bizarrely was completely wipe out this afternoon and slept for 2 hours, which is unlike me. Anyway, less of me more of you sweetie! Do you know how long you have to stay on the LID for-what are your meals like or are you taking in your own supplies? Hope that you get to come out really soon lovely. And well done you! I'm sorry you are feeling poorly. I remember I was fine for about the first 12 hours then felt nauseous, but for me the good news was it didn't get any worse, so I hope the same for you! Big love Els xx
Feefraser
Posted by

Hi, Rich Kazzy and Els, you all see to be coping great, well done. You have made me feel a lot better about things for the 19th. 

I have no idea about bloods or scans or anything that comes after (or during for that mater) the RAI. What is WBS? And tracer pill and a at what time do you get these? What else happens and when do you know if it has worked?

So what have you done that passed the time the best? Was it TV, reading, sleeping during the day? or anything else? How was it having visitors for such a sort time, did it break the day up? I won't be getting any because James is with the kids, but I know there is an incoming phone (sure james will just use that to phone me an ask how to work the washing machine and how to stop the kids crying? lol ;). 

Overall how are you all doing, are you thinking about the long term or the here and now.? I am intending to go in with a view that there are a lot more people in a lot more pain and suffering in the hospital and that I am lucky there is such a effective treatment for this cancer, however I know emotions take over and have a huge part to play in your view on things. 

Sending lots of love to everyone and wait for reports of being able to fly or morph into liquid :)

Fee x

arzosahr
Posted by

Hey Fee, Els, Kazzy, Barbaral and everyone else who i'm sorry i can't remember your names!

I'm ok other than the nausea, feeling a bit low, but then i'm tired - no sleep last night!

I do still catch myself thinking long term, but trying to occupy myself with other stuff to stick with the here and now.  

Oh for any bookworms out there see if you can grab yourself a copy of sophie kinsella's "undomestic goddess" or "secret dreamworld of a shopaholic" both great for cheering me up!

Take care everyone

Rich

Woolymammoth
Posted by
hey Fee! WBS is Whole Body Scan. You'll usually have one after your first dose of radioactive iodine therapy (sometimes called RAI or i131). It's a totally painless scan which shows the medics where the biggest 'uptake' of the radioactive iodine is. The idea is then they have a clearer picture if they don't alady know, of whether there is any spread to be found. It would be entirely normal for the picture to show a bright glow in the thyroid area as that's where the remnants of your thryoid and thyroid tissue bed are. 6 months After (usually) you take a much much smaller dose of RAI ( about 1/20th of the dose you have for treatment) which means you don't have to stay in isolation for that. The idea is that they take another whole body scan (WBS) at this point and then they'll compare the scan from 6 months ago with this one. Hope that makes sense? Also if you check out th '5 Days to go post' I've written about the actual RAI experience from six months ago.mso I'm roughly 6 months ahead of you xx I also took the view Like you said that as I walked through the cancer ward there were people there a lot sicker than me having really aggressive chemo. I felt blessed by this. I don't know if that's wrong, and we all handle things differently. I'm not saying it was all easy. Had a couple of low points and I guess that's we're you are now Rich? Kind of feels like when you have a hangover and you really wish you didn't. I flt a bit poisoned and just wanted to get back to normal. But I promise you will. Day by day. Any other questions pls ask, Love to all of you Els xx
Feefraser
Posted by

Hi Rich,

You are bound to be feeling low, not sleeping is bad enough at the best of times but also having no contact with people and all the emotions that come with TC. Sending you a big virtual hug ((((((((Rich))))))))))

Will add those books to my bag, I am mostly found in a factual dog training books but want to take  books to get lost in, you don"t really get lost in  "How dogs learn" and "Clicker training your puppy" lol (I am a dog trainer BTW ;)

Still not sure how my James will get on with kids I had a testing day today. Jessica my 2 year old was eating toast with jam and said "mummy look I made a welly boot" (she had bitten a boot shape out of her toast) "well done" I said "it does look like a welly boot" she bit into the other slice and said "look mummy a pair of welly boots" "wow yes jessica a pair" I was happy that she had been creative and showed she had understood the concept of a pair. I went to get the baby and when I came back I found jessica walking about with a bit of toast stuck to each foot! "what a good girl I am mummy I put my wellys on myself"....what do you say to that! I took them off her new white tights, and she went to eat one, I said no it has dog hairs on it now darling you cant eat that. I went to rinse the tights and when I walked back to the sitting room there was Jessica sat proudly next to Darwin one of our dogs saying "it has lots of dog hairs on now mummy" poor Darwin had a welly shaped bit of jam and toast stuck to each front paw and his eyes were popping out his head...well trained dog not to eat the toast but not so well trained child...was frustrating at the time but funny now. I might take some "how to train your child" books in with me.Just cant imagine how James would handle it lol 

Take care Rich 

Fee

Feefraser
Posted by

Thanks Els,

I did read that post, you have a lovely way of putting things, love love love the humming birds and will be steeling that one! It is all individual your right, but just hearing people who are going through it or recently gone through it, make you feel less alone. I have had a few wobbles recently but some posts on here have made all the difference to my mood. I think like anything else it is the unknown that is scary and the feeling of having no control. I hate the not understanding and the way my brain goes to mush when I see my consultant, but a small comment on here when someone said take a notebook made all the difference, so simple but very helpful. I am just staggered at the amount of time people have to answer questions in such detail and with such care, I wish I had found the forum before my TT opp. 

Thanks MAC friends your all great x 

arzosahr
Posted by

^^ what Fee said!

Thank goodness for this online community - it's helped me no end!

whenever i've gone to a consult meeting, i lose my ability to say anything other than "right," "yes," "no" and "ok" lol.  Good job i have someone with me to ask questions!

Had another geiger reading @ 9am - 3255, so coming down, i'd be lying if i said said i'm not disappointed as it means no going home today - on the bright side i'm hoping it means i've taken as much iodine in as possible to do what it needs to do. I might be able to go home tomorrow, but will have to see how things go.

UPDATE:  just having a panic now after a call from my GP, as part of my bloods on friday they checked my electrolytes - i have to go back for a retest of my kidney function in 4 weeks...  Really worrying now ;(

Kazzyx2
Posted by

Hi Arzosahr,

Gawd i did feel for you when i read your message, stuck in that room, severely hypo not the best for processing the information from your GP.

Try if you can to take a deep breath and tell yourself that your hypo state will make the worry worse. 

Now, none of us know exactly why your bloods are out slightly as we are not experts but it's my guess that it's related to being /going hypo. I've a vague memory of reading something about hypo kidneys, e.g they are affected when we go hypo. My instinct says that this doesn't make a big difference t(if any) to where you are with your thyroid cancer.

Whatever it's all about see if you can find a positive slant on it because it will be such  a waste of your energy if you spend the next 4 weeks worrying.

I am perfect of course and never worry unnecessarily, never waste precious energy, make the most of every day............., haha if only. But i do try.

Kazzy

Woolymammoth
Posted by
Hey Rich I concur with Kazzy too. I think it would have been the worst time for you to have things like electrolytes measured because you are going to be way over the place at the moment. Keep the faith sweetie. I know like Kazzy said easier said than done xxx
barbaral
Posted by

Your blood last week should be all over the place - they really can't make any assumptions on the readings of a hypo person.

My hospital may have different rules from yours but I was discharged with a card saying NO BLOOD TESTS for 6 weeks after the radiation. I would push back to the GP and tell him/her you need 6 weeks to get your medication back stable again and they can take the blood after that.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Feefraser
Posted by

Aw Rich I have no Idea about bloods, I wish I did so I could help you settle your mind. But I do think it would be worth contacting your doctor and asking more about it  and when it should be done for realistic results.

This is just the worst time to be dealing with this and I know you wont be sleeping tonight, thinking about you and hope it won't be too long a night for you. Keeping everything crossed you get out tomorrow too x

Fee

arzosahr
Posted by

Latest reading is still over 2000 this morning ;(

Does anyone know what the "magic" number generally is before getting paroled?

Worried about going home at the moment, as when parents visited me, mum had a banging headache and dad came away with a dry mouth. 

UPDATE: my levels aren't satisfactory, so i'm staying another night. The physicist mentioned that it could be due to uptake in the lymph, etc - i don't know whether to be pleased that there is that uptake or worried about it lol (did i mention i'm a worrier?)

UPDATE 2: Just had an ENT doctor check in with me see how i am, etc, Asked her about uptake and ENT team aren't concerned at the moment as it's all variable - aiming for me to be able to go home tomorrow after 4pm.  Still worrying... d'oh!

UPDATE 3: Confirmed that I am ok to leave tomorrow (sat) after 4pm, apparently instead of my levels halving every day like most ppl, my levels are halving approx every 1.4 days. And i can come off LID straight away ;)  Start my T4 tablets on sunday morning and have to change my WBS to later next week as they reckon i will just light up the whole scan unless they give me a bit longer to get my levels down

arzosahr
Posted by

Ok, so i've just had a phonecall from my GP saying i need a bloodtest this week to check my electrolytes as they have received another of my blood results back for AKI.

Regardless of the fact I arranged a blood test in 4 weeks when they rang last week, now they def want me to have a test this week - I'm now really worrying about my Kidney function and what is wrong!

I've googled AKI and scared myself silly - I'm sitting here about to bawl my eyes out right now!

barbaral
Posted by

NOW JUST YOU STOP THAT RIGHT NOW RICHARD.

Panic will do you no good at all.

BUT first things first, call the hospital and check that it's actually safe for them to take blood so soon after radiation. I think you could be putting a phlebotomist and the analytical lab at risk by sending your glowing radioactive blood for testing.

Next - WHY kidneys? I had a quick look at the sort of things that electrolyte tests cover and they include stuff like calcium and sodium. If you were on LID for 2 weeks, chances are you cut out most sources of Calcium - milk, cheese, soya etc. You also cut out or cut right back on salt - so your Sodium is likely to be all over the place.

Please try not to think the worst - there are a whole bunch of reasons why your blood wouldn't be 'normal' when you were off your meds and following a crazy diet. And as far as I know, I've never heard about kidney problems going with Thyroid Cancer (unless you gobble too many calcium tablets and give yourself a stone).

So put your head between your knees, take a deep breath and tell yourself to stop worrying.

(((((hug)))))

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

barbaral
Posted by

Wow! How bossy was that?

I should have been a school teacher!

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous